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Monday, August 4, 2014

FAQ's and Questions People Are Too Afraid To Ask

I wish you could go somewhere with us. Anywhere... it wouldn't matter. And if you did... it would occur to you how MUCH attention Lilah gets in public in the form of stares, smiles, second looks and questions. Perhaps you would stop and think, "Wow, this takes some getting use to."You might get angry at the stares and the sideways glances. The comments that begin with a, "How old is she?" To a, "Oh! I thought she was 9 months old and walking!" And then an added, "She sure is little!" You might wonder why people feel the need to tell you about your own daughter.You might get annoyed with the people that stop you and want to see her. That tell you she is, "The most adorable little girl I have ever seen." And in the cases when you hear roaring laughter and you turn around with a little panic on the brain wondering if perhaps she is the root cause of the laughing. And you turn around to realize she is... but for all the silly faces she is making at the next table.You might think it is so sweet how much positive attention she gets and how the word "cute" is said over and over by everyone. And then you realize she will always be told this and at some point in her life, she will probably come to hate the word "cute" and want to be seen as something else.It might occur to you that for you... this attention is temporary and you get to leave her side and go on and be out in public without the attention... but for her... she will always have dwarfism and never know what it is like to go somewhere without it.And when you really add up all of the attention and sit back and think about it... you would realize that 95% of people are genuinely curious... with no ill-intentions. That is what I have come to learn.And so, I try to treat every encounter as an opportunity to share our story and educate about dwarfism. Even when I am in a hurry. Even when I have already talked about it ten times that day. Even when I don't feel like it. Even when people are rude. (Aren't those the times when it is needed the most?) If they are left with one sentiment, I want it to be heartfelt, sincere and meaningful. These adjectives are words that penetrate deep down into the heart. And when they get there they start stirring things up... for the good. That is where new attitudes, outlooks and perspectives are born. That promotes change. We need change.My challenge: how do I get to someone's heart in a matter of seconds? I don't. I can't. So this was my solution: create business cards for Lilah. Then I get more than a few seconds... and that way, when someone is interested, curious, or in love with her... they can learn more. I thought long and hard about what to leave with people that would fit on the size of a small card. What did I want people to know? I decided that I wanted them to know Lilah for herself. Her whole self. Her whole story. Her daily life. Dwarfism doesn't define her. And they would soon realize that... and at the same time... by knowing her... they would indeed be learning about dwarfism all the while.It looks like this...

I purposely kept it cryptic... haven't you heard? Curiosity kills the cat. Not knowing exactly what her story is will make people want to learn more.And I have been thinking... I get asked a lot of the same questions over and over... and then sometimes I don't get questions that perhaps crossed the mind? So I have compiled a list of: Frequently Asked Questions and The Questions People Are Too Afraid to Ask:1. Does dwarfism run in your family? If you have another child, will it be more likely that child could be born with dwarfism? (And... if they have not met my son...) Is your son a little person too? (These are the number one questions I get asked all the time in addition to... how & when did you find out? Click here to read more about that.)The answers to these questions are simple. No, no and no. Achondroplasia occurs in approximately 1 in 25,000 to 40,000. 80% of these cases (meaning... the other 20% would be born to little people... yes they have a 50% of having children that are little) occur randomly by a mutation of a specific gene during conception. My chances of this occurring with another child are THE SAME AS YOURS. This always surprises people. And no, my son is not a little person (and it would be perfectly fine with us if he was)... but, I do not know of any situation in the history of forever (please correct me if I am wrong) outside of twins where there have been two children that have been born with achondroplasia to average-height parents. (I got asked the "son" question twice by a doctor and a nurse last week and I was so surprised at their lack of knowledge about dwarfism. BUT, I have to remind myself that it is very rare and many medical professionals would not have experience in this area... again, another chance to educate.)2. What are the appropriate terms to use in talking about a person with dwarfism?The PC terms are dwarf, little person (sometimes referred to as LP), person of short stature and person born with dwarfism. I personally do not like the term dwarf because I don't think it conjures up positive images in the average American's eyes and I don't think it is fair. I don't think that because you were born with a mutated chromosome it should make you a _________ . I think in our lifetime that will also be an unacceptable term. The word 'midget' is on the National List of Derogatory Words and is considered highly offensive. Not just to describe a little person but in any fashion of the word. Average-height is the term used for referring to a person without dwarfism as opposed to normal-height or regular-height. I should mention that personally, I am not easily offended and as a rule of thumb, I don't want people to be on eggshells around me worrying about saying something offensive. I am understanding and this is a good guideline. We all make mistakes and just being aware of what is appropriate is helpful.3. How tall will Lilah be? Where does she fall on the growth charts? What size clothing does she wear?I don't know exactly. She will most likely be between 3.5 ' and 4.5' based on averages. She has her own set of growth charts based on individuals with achondroplasia and she is not compared to an average-height child's growth chart. Lilah is current in size 3-6 months clothing and can sometimes wear 6-9 month clothing. In my opinion, she is about the size of a 6-month old. She is less than 20 pounds.4. Is Lilah behind on her milestones? What have her biggest challenges been so far? What is her next potential surgery?No. She was able to walk at 14 months and is now running. Achondroplasia only affects the physical body and not her intelligence. She is saying lots of words and phrases, loves to dance and has a silly, fun-loving personality. Her biggest challenge (and ours) was her sleep apnea that we discovered around 6 weeks old. She was diagnosed with obstructive sleep apnea and had to wear electrodes 24/7 that we plugged into a monitor when she was sleeping. The alarm would trigger once she stopped breathing for 20 seconds. She was on this monitor til about 8 months old. To say this time period was challenging would be an understatement. Sometimes the alarm was quiet and other times it would go off 15 times a day/night. It is something she has outgrown to an extent and she just had her tonsils and adenoids removed to help improve this as well. Her next potential surgery is around the age of kindergarten where she will most likely have to have surgery to straighten her legs.5. Do you watchThe Little CoupleandLittle People Big World?No... haven't seen it. Although I have heard really good things aboutThe Little Coupleand I am thrilled they are representing for dwarfism and educating along the way. (The man and women featured in this show have a type of dwarfism called Spondyloepiphyseal Dysplasia. Lilah was born with the most common type of dwarfism called Achondroplasia. This is also what the woman in Little People Big World was born with.)6. Is part of you so glad that she gets to stay little when as mamas all we want is for time to slow down and for our babies to stay little? Is that the silver lining to this all?I am amazed by her littleness... the way her body moves and bends differently; the way she needs extra support still when I hold her in my arms; the way she can stand up without using her hands; the way she can climb onto things using her upper body strength that seem way too high; the way she falls hard and often, flat on her face... but is never hurt by it; the way she still feels so light in my arms; the way her arm folds tan and leave little white stripes in her creases. It all amazes me really. She is so unique, so special and I just couldn't love her anymore. I love her the way she is. But, back to the question that I have been avoiding... to say yes to this would be indeed inaccurate because it would not just be a yes. It would need a large asterisk with that yes to show that it is not that simple. In our world, I am constantly reminded of her littleness when she is with others her age and when I see clothing in the size that is consistent with her age let alone people that remind me of it several times a day. I love her snuggles and cuddles and they way she fits in my arm nook. But it is not exactly like slowing down time and getting to expand on this baby stage. It is different than that. What is the silver lining? The change in us, being able to become advocates, the constant learning and growing, all the friendships and life-long bonds that have been formed, and just... her. We wouldn't change anything.7. How do you feel about films that feature little people such as The Wizard of OZ, Snow White and the Seven Dwarves and Game of Thrones?I have never seen Game of Thrones... I don't have an opinion about it. People in the little people community seem happy with Peter Dinklage and the awareness he brings to dwarfism in a positive light. I personally don't know. I think the Wizard of OZ and Snow White and the Seven Dwarves and any other Sci-fi or blockbuster (The Wolf on Wall Street) have done a HUGE disservice to little people with regards of how they are viewed in society. I cannot tell you how ridiculous it is as a mother of a child born with dwarfism to witness such a mockery to people who are born with a physical disability. Unless you are in my situation, this may not hit so close to home. I get that because before Lilah's diagnosis, these movies didn't bother me. But now I have more awareness for equal treatment of all people and it is so sad on many levels. The society that enjoys this type of humor, the film makers that allow it, the little people that take these roles. All of it just adds to the generalizations that little people are entertainers and should be ridiculed for their physical appearance. Dwarfism is rare and these experiences may be a person's only exposure to dwarfism. Because of this stereotyping... it is challenging in our advocacy to change minds and break down these misconceptions.8. What work are you trying to do with your advocacy? Why is it so important?Being an advocate is a choice. It is not an easy position, but we made the decision in a matter of hours after the diagnosis that we were going to be leaders in advocacy in dwarfism and join those who were already paving the way. It meant that we would be very open and honest about our story and journey. With this, it means we are always subjected to opinions. Some opinions may clash from our own and lead to criticism. This happens. To be expected... it is a part of it that you have to accept as an advocate. If it was incredibly easy and received well 100% of the time, there wouldn't be a huge need for it. But there is a HUGE need for it. Our society has been misinformed about little people over and over in the media and specifically from Hollywood. There is a "mysterious" shadow that follows little people around to this day. We would like to take the mystery out of dwarfism and present it as it really is. I want to reach others through love. Those that know Lilah, are familiar with Lilah and love Lilah are also going to be advocates for the entire little people community. We are creating an advocate army that is going to go out there and stand up for little people when the need arises, educate, preach different is beautiful and live out their lives that way. 9. Would you say that you live a "normal" life?Personally, I would be insulted by the thought of living a "normal" life. Yuck. No, I want to live an extraordinary life thank you. Normal is for the birds... we do not try to do normal, fit into normal and live normal. We are rule-benders, adventurers, blazing our own path kind of people. Has dwarfism impacted our life and made a huge impact on our lives? Yes... in the fact that we now have an advocacy component and we talk to everyone. Other than that... not really. We live our lives as we would have otherwise and Lilah's dwarfism doesn't hold us back at all. In fact, I would say it propels us forward.10. (Only my best friend has asked me this... and she has fair game to always ask me anything! But it made me think that perhaps others might want to know too...) You were very sad when you first found out and now you are always very positive... do you ever still get sad?Yes. Never for long. But, yes. Sometimes, I have sad moments when something hits me... usually when I realize something that Lilah will never be able to do... like reach to the top shelf of the grocery store for a can of beans. Or reach the paper towel dispenser in the public restroom. Sometimes it is when I see young girls in their teen years that look like me. They are running around with all of their friends and sometimes I try to picture Lilah there. And it can be hard. But, I always remind myself... we are not there yet. We will get there. It will be ok. I worry about bullies and comments and stereotypes. But I try to push that worry off until it is really needed. Right now, there is no need to worry about that. I am fielding all negativity because the kids are too young to understand and I have thick skin. Mostly, I just feel so blessed and loved and honored knowing that God entrusted me with the lives of these two precious children. That is what matters. I focus on them being here now. And I couldn't love them anymore. I also rely on my average-height mama-friends with a child with dwarfism and my LP mentors. They are an incredible support system that play a huge role in my life.A few of my faves from this summer...

9 comments:

I have come to your blog from Enjoying the small things and I just wanted to say that your daughters beauty took my breath away. She has to have one of the most beautiful faces I have ever seen. Keep up the amazing work x

I have been involved with the cleft lip and palate community and I respectfully offer one piece of advice for you. The most important thing that will affect your child is your response to her. She watches you interact with the public and will take her cues from you. It is admirable that you want to educate others, but you do not owe the public repeated messages on your personal family time. Save your energy for respectful interactions with her and your family and she will incorporate this strong sense of herself in her growing interactions with others. Also consider that she is an individual with her own rights and may come to read this blog as she grows older. This wide internet exposure of her everyday life might not be what she might have chosen.

Wishing you and your family blessings of peace, love, and acceptance for all of your many gifts.

You are, as Lilah's mother, an extremely intelligent and gifted young woman! She is as lucky to have you as you are to have her! She is not just CUTE, she is beautiful as is her mom! God gives most of us challenges in our lives-some are bigger than others. He gave you Lilah, because He knew you were the right person to handle it. She will grow up to be able to handle life in a positive way, because that is what you are giving her. All of you will flourish-I am certain. God is with you and he will continue to bless you! Keep writing! You and Lilah are an INSPIATION!

Lilah is a beautiful little girl. Our grandson Kody has achondroplasia. He is a loving 9yr old with lots of talent. He has a beautiful singing voice and can dance up a storm with amazing moves. He has the best personality going. We can only hope that the future is bright for him.

LOVE THIS! My sentiments exactly. I have Kyle who is 16 months with achondroplasia and we couldnt love him more. I definitely educate all the time also, like the proper terms to use and such. Love the business cards! Famous Lilah. I haven't ever heard of a average height family having more than one child with achondroplasia, but I wish we could. I would love another one. You are right, Kyle fascinates me every day. We are so blessed.

I found you through Kelle's blog. Lilah is gorgeous~ golden curls! big blue eyes! What's not to love? I taught a LP this past year in kindergarten. I was only nervous because he had a shunt in the top of his head. I shouldn't have worried. He stole my heart and the show! Every kid loves him and all the staff. His personality is larger than life. I am so blessed to have spent a year with him. He came flying toward me Tuesday night at Open House before he headed off for first grade. Lilah will be just like Clyde and steal the show her whole life. :)

I haven't visited here in a while. I love your voice. You're a great writer. I actually didn't plan on commenting this time, at least not with anything I haven't already said before, but I got to Question 10 and I wanted to chime in. Let me start by saying that I am in no way comparing myself to Lilah. However, I was born with quite a few physical complications of which there was never a clear "she's going to be fine" consensus. I had multiple surgeries, physical therapy, and it was always a wait-and-see game. Was there brain damage? Would I ever walk? Would I be crippled by arthritis? Would I someday be able to carry a pregnancy? (No, Yes, not yet, and not only was I able to carry a pregnancy but I carried a multiple pregnancy to full term.) However, I don't have full movement in my left arm and I have three fused vertebrae at the back of my neck (to name a couple "imperfections"). There have been many times in the grocery store where I've had to ask someone to grab a can of beans from the top shelf for me as I cradled a baby/toddler in my right arm because my left arm is also not strong/coordinated enough to do the holding. I was never able to do cartwheels with my friends or jump off the high dive at the pool or try out for cheerleading. I love to go to yoga classes, but I feel like a fool because my body doesn't move the way it should. I go anyway. My point to this rambling comment is this: Lilah will go through a time when she is hyper-aware of her limitations, but she will also shatter expectations, and she will learn to live with, through, and beyond those limitations. Because she knows no other way. Because no one will know better than her what she's capable of, when she can push forward and when to pull back. And who knows, maybe she won't like beans anyway. ;) And those teenage girls, well, I have a feeling Lilah will be leading her own pack.